Patient participation in safety management. Diana Delnoij The Hague, June 11, 2013

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1 Patient participation in safety management Diana Delnoij The Hague, June 11, 2013

2 Affiliations Head of the Dutch Institute for Quality in Healthcare Professor at Tilburg University, chair Transparency in healthcare from the patients perspective Research topics: Measuring patients experiences in healthcare; Internal and external use of quality indicators; Role and position of patient organisations; Involvement in WHO Europe project on Exploring patient participation in reducing health-care-related safety risks, editors Diana Delnoij & Valentine Hafner, WHO, 2013

external use of quality indicators; Role and position of patient organisations; Involvement in WHO Europe project on

3 Hippocratic oath Keep the sick from harm and injustice Question: Is there a role for patients in preventing harm?

4 Patients can be involved in the following ways: Choosing a safe provider; Helping to reach an accurate diagnosis; Participating in treatment decision-making; Contributing to safe medication use; Participating in infection control initiatives; Checking the accuracy of medical records; Observing and checking care processes; Identifying and reporting treatment complications and adverse events; Practising effective self-care and monitoring treatments; Providing feedback and advocacy to focus attention on safety issues. Source: Angela Coulter, Engaging patients in healthcare, OUP, 2011

Observing and checking care processes; Identifying and reporting treatment complications and adverse events; Practising effective self-care and

5 Examples of patient involvement 1. Hand hygiene 2. Surgical safety 3. Monitor treatment 4. Reporting complications and adverse events

6 Hand hygiene (1) Review by Schwappach (2010, Med Care Res Rev) In several experiments: 57% of patients had asked staff about hand washing; Of those: 91% had asked a nurse 33% had asked a doctor Increase in soap usage was observed already in the preprogramme period, due to anticipation and fear of being exposed.

91% had asked a nurse 33% had asked a doctor Increase in soap usage was

7 Hand hygiene (2) Systematic review by McGuckin & Govednik, Journal of Hospital Infection, 2013 (in press) Patients are willing to be involved: 26-60% (n=10 studies) state that they would ask healthcare workers about hand washing; Often, only a minority of patients actually does: 5-80% of studies Permission/explicit invitation by healthcare worker increases chance patients asking about hand washing

healthcare workers about hand washing; Often, only a minority of patients actually does: 5-80% of

8 Top-3 of reasons why Bulgarian patients hesitate to ask nurses or doctors about hand washing % of patients who: Asking nurses Asking doctors Belief that healthcare workers can be trusted Belief that healthcare workers know about hand hygiene 75% 76% 72% 67% Feel embarrassed or awkward to ask 69% 68% Source: Vatcheva-Dobrevska R. Patient engagement in hand hygiene in Bulgarian health care. WHO Report Exploring Patient Engagement in Reducing Health-care-related Safety Risks, chapter 3

hygiene 75% 76% 72% 67% Feel embarrassed or awkward to ask 69% 68% Source: Vatcheva-Dobrevska R.

9 Surgical safety Literature on wrong site surgery; Two studies in which patients were involved in marking the surgical site; DiGiovanni et al: mark extremity NOT to be operated on; Bergal et al: mark YES on surgical site.

surgical site; DiGiovanni et al: mark extremity NOT to

10 Results surgical site marking DiGiovanni et al: 59% correctly marked the site NOT to be operated on; Bergal et al: 68% marked YES at surgical site; 2 of those patients did not mark the correct site.

11 Monitor treatment Example: Hip or knee arthoplasty Focus group discussions with patients List of items reflecting quality of care from the perspective of patients Survey among patients asking e.g.: How important is it for you to be treated with respect? How often did doctors/nurses treat you with respect?

12 Patients experiences with top-5 important getting information about do's and don't after surgery quality items average importance (1=not important; 4= extremely important) % patients with negative experiences clean room / bathroom getting aneasthesia as agreed upon getting information about symptoms to monitor after surgery getting appropriate physiotherapy

experiences 3.59 6.8 clean room / bathroom 3.48 8.6 getting aneasthesia as agreed upon 3.46 6.

13 Patients experiences with top-5 important getting information about do's and don't after surgery quality items average importance (1=not important; 4= extremely important) % patients with negative experiences clean room / bathroom getting aneasthesia as agreed upon getting information about symptoms to monitor after surgery getting appropriate physiotherapy

14 Reporting adverse events Examples of surveys: Commonwealth Fund (international) Consumer Assessment of Healthcare Systems and Providers (CAHPS) (United States) Care Quality Commission / Picker Institute Europe (England) Consumer Quality Index (Netherlands)

Providers (CAHPS) (United States) Care Quality Commission /

15 Medical, Medication, or Lab Test Errors in Past Two Years 15 Base: Adults with any chronic condition Percent AUS CAN FR GER NETH NZ UK US Wrong medication or dose Medical mistake in treatment Incorrect diagnostic/lab test results* Delays in abnormal test results* Any medical, medication, or lab errors * Among those who had blood test, x-rays, or other tests. Data collection: Harris Interactive, Inc. Source: 2008 Commonwealth Fund International Health Policy Survey of Sicker Adults. THE COMMONWEALTH FUND

in abnormal test results* 13 12 5 5 5 10 8 16 Any medical, medication, or lab errors 29 29 18 19 17 25 20 34 * Among those who had blood test, x-rays,

16 Patients' experiences with hospital safety (n=94 hospitals, ± patients, Netherlands, 2009) was your identity checked before an intervention? 13 was your identity checked in handing out medication? 29 did staff pay attention to unsafe situations? 11 did you feel safe with hospital personnel? 5 0% 20% 40% 60% 80% 100% never/sometimes usually always

13 was your identity checked in handing out medication?

17 Did you feel safe with hospital personnel? 0% 20% 40% 60% 80% 100% best hospital 2nd best 3rd best average never/sometimes usually always 3rd worst 2nd worst worst hospital

3rd best average 2 2 2 5 never/sometimes

18 Obstacles for patient participation: Supply side factors: Attitude/culture of professionals Access to medical records Patient factors: Lack of self confidence Dependency on healthcare professionals Inability to participate due to illness Lack of knowledge / health literacy Unwillingness to be engaged Source: WHO, Delnoij & Hafner (eds), 2013

Dependency on healthcare professionals Inability to participate due to illness Lack

19 Examples of obstacles from qualitative research in 9 European countries Patient participation in handover process is hampered by: Negative climate for communication Healthcare workers too busy Lack of information (Flink M, Hesselink G et al, BMJ Qual & Safety, 2012, 21) Patient, Italy: I go back home with a bag of drugs and trust me that this was a mess I could not sort out.

busy Lack of information (Flink M, Hesselink G et al, BMJ Qual & Safety, 2012, 21) Patient,

20 Patient survey medication safety Basia Kutryba, Jarosław Woroń, Halina Kutaj-Wąsikowska, Andrzej Warunek. Patient safety rights and medication safety in primary care in Poland. WHO Report, Chapter 5

21 Inpatient versus ambulatory care Inpatient care: Patients expect competent care; Hesitation to be actively involved; Safety is responsibility of professionals. Ambulatory care: Patients and family members must assume responsibility for: Self care Medication safety Source: WHO, Delnoij & Hafner (eds), 2013

22 How to stimulate patient participation in safety?

23 National level Patients rights legislation Education of doctors and nurses Communication skills National programmes of patient experience surveys Source: WHO, Delnoij & Hafner (eds), 2013

24 Provider level Safety management systems: Incorporate patients views Provide information about safety management Conduct patient experience surveys on hospital level Provide public information about hospital performance with respect to safety Source: WHO, Delnoij & Hafner (eds), 2013

25 Primary process Professional-patient interaction: Shared decision-making / informed consent Invite patients to participate / be actively involved Provide individual patient education to improve: health literacy; self-management: Source: WHO, Delnoij & Hafner (eds), 2013

26 Thank you for your attention

Measuring patient experiences in the Netherlands. Diana Delnoij OECD, Paris 17 November 2011

Measuring patient experiences in the Netherlands Diana Delnoij OECD, Paris 17 November 2011 Overview of the presentation Dutch system for measuring patient experiences Principles of patient experience